13 January 2010

Maintaining Meaning and Identity

A role is 'the behaviour expected of a person occupying a given status or social position ... Roles are governed by certain norms or expectations, but are also, to some extent, interpreted by the individuals playing them'. (O'Donnell, 1992)

All of us have roles, whether we are aware of it or not. We have roles that we are born into, like being a father, a sister, a cousin, a taxpayer. We have roles we may choose, such as that of a critic, a cosmology enthusiast, a blog-writer; and we have roles which describe our vocational lives, such as a psychiatrist, or a garbage man. All of these are different examples of our social roles. These roles that we each have contribute to our identities. (Hagadorn, 2000).

We all have them.

We are, after all, social creatures, right?

Well, having a diagnosis of ME/CFS can also become a role, and because of the physical and cognitive debilitation of this disease, it can be a role which overshadows some all of our previous roles. It can compromise our role as income-earner, a student of goodness-knows-what-ology, or as an avid fan of the 'X-Files' because we become a 'sick' person, a 'patient', and a 'sufferer'. All these are accurate terms and roles, and it can be very difficult to maintain a sense of self which doesn't, in some way, reflect the effects of ME/CFS. But these roles do not need to define our identities, and as difficult as it may sometimes be, it is important to strive for the things which our unique to us, whether they are our beliefs, interests or hobbies.

Individuals with ME/CFS may have limited resources to be able to participate in their previous roles, and although a change may a occur in an individuals roles when they become sick with this disease, it is important to try and maintain roles that are separate to ME/CFS, and an identity which is independent of sickness. Some roles may incorporate aspects of what we have learn from our illness, through advocacy, peer support, and information gathering and sharing, however individuals still maintain an identity which is not affected by ME/CFS, whether it is spirituality, relationships, belief systems, political interests, belonging to a club or group, a provider of care and attention to pets, a consumer of goods and services and many many more.
A vocational role can be attributed to any form of ac, paid or unpaid, as work can be defined as the engagement of mind, body and spirit in a productive manner. There may, therefore, be opportunities available to individuals with ME/CFS that provide productive engagement in 'work', even though it may not be the career path of our planning. This may include volunteering for half a day each week at a local library, or for a couple of hours a the local school. There are opportunities to work from home (Kielhofner, 1985), making phone calls on behalf of an organisation, writing monthly newsletters for the local church, writing a blog entry every few days, or caring for a neighbours pet while they are away, depending on your health and ability. These activities provide us with occupational roles (Kielhofner, 1985), and contribute to an identity outside of sickness. They may not be the high-flying jet-setting career we pinned our dreams upon, but the little things matter just as much. We don't always have to define ourselves by this disease.

Hagadorn, R (2000). Tools for Practise in Occupational Therapy; A Structured Approach to Core Skills and Processes. Churchill Livingstone. London.

Kielhofner, G (1985). A Model of Human Occupation; Theory and Application. Williams and Wilkins, Baltimore, USA.


  1. Question: What is ac ? To us it means air conditioner ;-)

    As far as Identity.... I learned a LONG time ago, I am NOT my house, I am not my belongings, in fact I am NOT my job.. I am who my spirit & heart says I am. I am what brings JOY to me.. My actions in the world of how I treat others reflect back to me who I am. .. and even so, as the book says, "What You Think if Me Is None of My Business." We each are individuals and hopefully not ruled by others OR our Egos..

  2. Thank-you - ac should be 'activity'. I often miss my mistakes :).

    I like that you are 'who your spirit and heart say' you are. Recognising this enables people to engage in activities which reinforce our meaning and purpose, reflecting our identity. And ensuring that sickness is not the be all and end all.